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Turning the tide for rare disease

Breast implant illness: a patient’s experiences and her mission to raise awareness and improve care

RARE Revolution had the pleasure of speaking to Robyn Towt, an active mother and three-time cancer survivor. At the age of 44, Robyn was diagnosed with cancer for the third time. The breast cancer led to Robyn having a bilateral mastectomy followed by reconstruction with silicone breast implants. Following the reconstruction, Robyn’s health rapidly declined and she became severely ill. Robyn attributes her debilitating symptoms to what Is known as breast implant illness.* Since having her implants removed, Robyn has become an advocate raising awareness about breast implant safety. She has shared her testimony at the FDA and co-founded the Global Patient Advocacy Coalition (GPAC)

Receiving a third cancer diagnosis

Before her third cancer diagnosis, Robyn was a busy, physically active mother to her two teenage boys. “I was living a very active, healthy life. Living in Arizona with really nice weather most of the year. I’ve always been into outdoor activities like hiking, golfing, water-skiing, wakeboarding, all sorts really,” Robyn says.

In May 2017 Robyn received a diagnosis of cancer for the third time in her life. This time it was breast cancer, found during a routine mammogram and ultrasound. “I had an outlook of ‘been there done that’, so I just wanted to get over it as quickly and easily as possible. My kids were 16 and 18 at the time, and I felt that motherhood was slipping away. I wanted to be living my life with them before they went off into the world,” Robyn shares.

Robyn chose to have a double mastectomy. “It was an easy choice for me: I didn’t want multiple surgeries, I didn’t want to be in and out of hospital and then recovering after each surgery,” Robyn explains. “Summer was coming up and I wanted to be as active as possible. I wanted to go to the beach, swim in my pool, go to the lake and use my boat. I wanted to have fun with my sons.”

Breast reconstruction after the mastectomy

With the mindset of wanting things to be resolved as soon as possible, Robyn explains that she wasn’t really interested in having a breast reconstruction but was guided down that pathway by her medical team regardless. “It was interesting, the way that it came about. When you’re diagnosed with cancer, you have a whole team of doctors. I had an oncologist, a breast surgeon, and a plastic surgeon.” Robyn feels that all the advice she received was strongly directed towards reconstructive surgery.

“I was assured it was safe. They made it sound so easy.”

Robyn even did her own research on breast implant safety before surgery. “At the time, in 2017, what I found on the internet was that breast implants were safe and FDA-approved. So, of course, I went along with the reconstruction,” Robyn explains.

The rapid onset of debilitating symptoms after surgery

Robyn chose not to have chemotherapy or radiation, yet began to experience symptoms associated with these aggressive treatments during pre-op preparations for reconstructive surgery. “I had tissue expanders placed to stretch the skin to get ready for the implants and I started to get sick right away. I had those in for three months; it was really painful and I developed rashes,” Robyn shares.

After Robyn had the breast implants, she became unwell at once: “When I got the breast implants, it was crazy how sick I got right away. I couldn’t understand what was going on.” She experienced a range of severe and scary symptoms: “It started with headaches and migraines every day. I had bad insomnia, constant fatigue and an intense acidic burning in my chest. I developed a bad rash on my chest and legs. My hair started to fall out, including my eyelashes. I was having heart palpitations even while doing nothing physical—a couple of times I thought I was having a heart attack or some kind of anxiety attack,” Robyn tells us.

“I was used to walking five to seven miles a day, before I had that surgery, and post-surgery I couldn’t even walk around the block; I couldn’t even walk to my mailbox. It was crazy.”

Looking for answers, Robyn began speaking to others who had undergone a mastectomy. However, those she spoke to told her that chemotherapy or radiation was causing their symptoms, and Robyn had opted not to have those treatments.

“The doctors I saw gave me their solution to every complaint I had. They gave me pain pills, muscle relaxers, anti-seizure medication, sleeping pills. I just kept thinking: there must be something else going on here. At this point, I thought cancer might be invading my whole body, and I thought I was going to die.”

Having the breast implants removed

Robyn received a message from a woman in her hometown who had also had breast reconstruction surgery. Before meeting her, Robyn had never heard of breast implant illness. “She explained that she had undergone breast augmentation 12 years before and had been sick for the last eight years, with her health continuing to decline.” When Robyn asked what exactly she meant by ‘sick’, Robyn was astonished to hear a match for nearly every symptom she was experiencing herself. “I knew right away, as soon as I saw her list of symptoms that breast implant illness made sense.”

Just four months of having them in, Robyn decided to have her implants taken out. Shortly after surgery, her hair started to grow back, her rashes cleared up and her persistent headaches came to an end.

“When I had the breast implants removed, I felt right. Literally that day, and every day after, I felt right.

Beginning her advocacy journey and speaking to the FDA

After having her breast implants removed and getting her quality of life back, Robyn began her advocacy journey to raise awareness on breast implant illness and protect other cancer patients.

“After I got my implants taken out, I was so shocked at how good I felt; I felt the exact same way I felt before any of this happened. And it made me pause and think: what just happened here and why didn’t anyone warn me? And if this is happening to me, how many other breast cancer patients is this happening to—maybe they’re just blaming it on the side effects of chemotherapy?”

Robyn learned about a Facebook group of thousands of women with breast implant illness, some of whom were going to the FDA in September 2018 to share their testimony. Robyn was able to join this trip and share her experiences and be part of requesting the FDA to hold a public meeting on the matter. Six months later, the FDA did just that.

“Breast implant illness has been going on for 40 years, ever since breast implants hit the market,” Robyn explains. “They were taken off the market for over a decade in the 90s. I have gone back and read all the transcripts on how they got back onto the market, and in my opinion, it wasn’t done properly. The manufacturers never proved that the products were safe. They didn’t have any long-term safety data because no one was tracking or monitoring patients through a registry.”

Robyn explains that a registry was finally created in 2019. She believes that going to the FDA created a sense of urgency for this registry to be set up and that without the meeting the National Breast Implant Registry might not yet exist.

Co-founding the Global Patient Advocacy Coalition and accelerating legislation changes

In January 2021, Robyn and Terri Diaz founded the Global Patient Advocacy Coalition (GPAC) to help connect women who have had or continue to have breast implant illness. By unifying the global community, this powerful alliance has helped accelerate legislation changes to protect future breast cancer patients.

Robyn and members of the GPAC community have worked closely with the American Society of Plastic Surgery, and extensively with Arizona legislators and medical boards in passing an informed consent law for breast implant surgery in Robyn’s home state. Robyn shares that the GPAC team is currently working on similar legislation in many other states in America.

“We implemented legislation so patients are presented with a checklist they should go over with their doctor before deciding to have breast implants. It informs them of all the risks that we, the GPAC community, wish we would have known. It also mandates surgeons to provide patients with the breast implant patient information brochure that is available from each manufacturer. Something I never got myself but wish I had.”

According to Robyn, the FDA had pre-market approval agreements with implant manufacturers that they should provide their brochure to every patient. However, according to a survey conducted by Robyn, which received over 5,000 responses, 84% did not receive the patient information brochure before getting breast implants. The survey also revealed that 84% felt they were not given enough time and information to make an informed decision.

96.1% of survey respondents felt that they did not understand all the risks, maintenance and complications associated with breast implants before having the reconstruction.

Looking to the future: resolving unmet needs and ensuring women have a choice

Robyn says she would like to see breast implant manufacturers take more responsibility for the physical, emotional and financial burden they have caused for countless women internationally. “I know women that have seen up to 50 doctors and specialists running all sorts of tests—bloodwork, CAT scans and MRIs. They have spent thousands of dollars of their own money trying to find an answer for their symptoms. It shouldn’t be like that. The manufacturers should have some customer service and offer financial compensation to cover medical bills and take care of the patients that are experiencing adverse events from these breast implants.”

Robyn wants to continue to drive the narrative on breast implant safety by having more advocates and medical professionals from around the world coming together to accelerate change. She would like to see a patient-centred approach, together with better collaboration between state policy markers: “I think real change happens when you get all the parties and stakeholders sitting at the same table talking about the problem.”

Robyn is excited about how the GPAC is collaborating globally to improve how medical professionals approach breast cancer patients with the options around breast reconstruction. “I want people to have options, to feel they have a choice—a choice to stay FLAT. They need to be better educated on breast implants so they can make an informed decision that is right for them.”

“This is a global women’s health crisis, and I am committed to improving the standard of care for breast cancer patients everywhere.”

* Breast implant illness is the term term given to the set of symptoms thought to be caused by breast implants.

For more information, please see this information from the UK Medicines and Healthcare products Regulatory Agency (MHRA) gov.uk/guidance/symptoms-sometimes-referred-to-as-breast-implant-illness


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